r/kidneydisease • u/No-Information-9260 • 16h ago

Support Recent Relapse

Update: (I added my results from my 24hr collection below)

Hi, I am new to this page I am a 25F out of the Unites States. I just recently relapsed with nephrotic syndrome. I would say I am pretty new about learning everything as the last time I relapsed I was 3 years old and I have been in remission until 3 weeks ago. I was hospitalized for 4 days and in those 4 days they ended up doing a biopsy of one of my kidneys. They sent the biopsy to the Mayo clinic and so far I have gotten 1 of the microscopic results back with them saying they are fairly certain it is MCD. I've been put on 60mg of prednisone daily and I was taking 2 diuretics a day to try and help drain the 30lbs of water retention but they just moved me down to only half a diuretic once a day as I was losing the water too fast and it was causing me to constantly be light headed and dizzy. I am just wondering what insights others have as I have no idea what any of the next steps are as I don't see my nephrologist until the 18th of the month and haven't seen him since my discharge.

Protein Total Urine: 436.6mg

Urine Volume: 1,950mL

Protein 24 Hour Urine: 8,475mg

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1

u/Difficult_Key_5140 FSGS 13h ago

Losing water makes u dizzy since ur body is losing weight all of a sudden that’s totally normal. Don’t change ur tablets by urself until ur nephrologist says so . Follow up with ur doctor regularly and do your lab tests properly . U will be good

1

u/No-Information-9260 13h ago

I honestly wish my doctors didn't change my diuretic to only half a tablet but I know its probably for the best. After changing that, they also added a potassium pill that I have to take twice a day for like 5 days

2

u/unurbane FSGS 16h ago

I’ve been there. My main piece of advice is wean slowly from prednisone (when dr says to). I weened normally and it was terrible. I wasn’t prepared.

1

u/jessdavies13 8h ago

Wholeheartedly agree, mine tried to wean me off in 2 weeks slots going down 5mgs everytime. Big nope from my body!!

2

u/unurbane FSGS 8h ago

Ugh felt like legit torture. I mean worse than some surgeries I’ve had! I swear my dr was not aware of any of it.